David’s Story

Name: David Makinson

Age: 54, born May 1964

Age Diagnosed: Soon after birth at The Middlesex Hospital, London – the child of a single mother who wished to put me up for adoption.

How has CHD affected your mental health?

In a nutshell, having a life-long heart condition places the mind on a ‘flight or fight alert’ for a significantly higher proportion of the time than someone without permanent health worries.

Living with CHD has often been described as ‘The Sword of Damocles’ hanging over one’s head – permanently, unlike the legend, in which sycophantic courtier Damocles switched places with King Dionysius of Syracuse for just one day to taste the opulence of power and prestige. According to the legend, King Dionysius wanted to demonstrate the highly precarious nature of his tenure as King by placing a sword above the throne and over Damocles’ head, point down and suspended by a single strand of hair from a horse’s tail. Damocles sat in the throne for only a short time before begging to be allowed to return to ‘normal’, such was the anxiety.

So it is with CHD – but for CHD patients, there is no option to vacate the metaphorical throne, or return to ‘normal’. The throne we are placed on at birth is our permanent seat – but without the title of King.

Inevitably, the stresses of living with a life-long condition take their toll, both mentally and physically. Whilst I have learned over my fifty-four years to recognise anxiety and employ distraction activities such as painting, writing and playing the keyboard, there are episodes of intense stress, particularly around hospital visits for examination and testing and, of course, in waiting for test results. With CHD, there is the ever-present fear of surgical intervention and early mortality. For many CHD patients living day-to-day with physical limitations and mental stress has a knock-on effect on potential living standards. I recognised in 2009 that I could no longer cope with the stresses of running a business on top of dealing with CHD. Thankfully, I have an extremely supportive wife who is prepared to shoulder much of the financial burden required to live comfortably in 21st Century Britain. Many CHD patients are not so fortunate.

I believe that most CHD patients are extraordinarily resilient and courageous in the face of fear and suffer anxiety that most people only experience very occasionally – but CHD patients need and deserve support. These are not self-inflicted woes; rather the harsh hand of cards dealt to us at the card table of life. We do not want and cannot leave the game. What CHD patients want is to be able to make a valid

contribution to society and live fulfilling and worthwhile lives – but we need support to reach our potential.

Physically, the advances in surgery mean that many CHD patients now live well into adulthood, with some even reaching their seventies. What is required now is to mirror the advances in physical treatment by developing strategies or a ‘toolbox’ to cope with the additional mental pressures that living with CHD presents.

How has The Somerville Foundation helped?

The Somerville Foundation is the only national charity which specifically focuses on CHD patients and their families.

There have been many periods of my life where I have felt isolated by living with CHD, largely unaware of the thousands of other patients around the country with a similar condition, fears and anxieties, but largely invisible to those without CHD. Many CHD patients have also experienced these feelings.

‘The Somerville Foundation’ offers a forum, a place where CHD patients can find their voice and ask for support and guidance. Through shared patient experiences both physical and mental services can be developed gradually to deal with the unique requirements of CHD patients.

CHD demands specialist services. In many areas of the country, NHS trusts are starting to recognise this and setting up ‘Centres of Excellence’ where medical professionals, i.e surgical teams, specialist cardiologists and nurses can pool their talents and share best practice to provide expert care. The Somerville Foundation is pivotal in delivering the message that CHD patients have extremely complex medical requirements that necessitate specialist services.

As loving and as supportive as my wife, Chris is, she doesn’t understand what it feels like to live with CHD or the toll it takes – but why would she? She recognises when I am anxious but is not trained or equipped to offer anything other than kind words and to shoulder the day to day burdens when I’m feeling particularly anxious. I’m very fortunate in that regard. Many CHD patients do not have that. The Somerville Foundation allows me to vent my feelings and frustrations and share my experiences and coping strategies with others who require support. This lessens the burden on my wife and family. For that alone I am extremely grateful to the Somerville Foundation for their tireless work in reaching out to CHD patients like myself and offering support and hope.

Is there anything else you would like to tell us?

As a child born with a Tetralogy of Fallot in the 1960s, I am amongst the older section of CHD patients living in the UK. Over my lifetime I have seen extraordinary changes, both in surgical developments and social attitudes towards those who are

‘different’. Though much of my school days were happy, I did experience the sharp end of being ‘different’ to my peers, particularly when I had to sit out physical activities. I was considered weak. Whilst I may be different and have physical limitations, I’m anything but weak. Living with CHD requires a determination, resilience and courage that many of my childhood detractors would shudder at. So far, I have survived two open heart surgeries, a life-threatening arrhythmic episode and have my third implanted defibrillator. I’m not done yet!

What is needed now is a more developed understanding about the needs of CHD patients amongst society, particularly employers, to enable CHD patients to live fulfilling lives, support themselves where possible, but without fear of recrimination or criticism when periods of rest or recovery are required.

I am a great believer in self-help, but there are times where CHD patients need more than they can muster themselves. The Somerville Foundation is the only UK charity specifically focussed on the needs of CHD patients. They have rightly recognised that alongside specialist surgical care, the mental health needs of CHD patients is fundamental in enabling them to live fulfilled lives.

To deliver mental health support to CHD patients, The Somerville Foundation needs to raise both awareness and funds to develop the ‘signpost’ strategies to direct those CHD patients who require help to the correct professional body.

For my part, as I am unable to run marathons, scale mountains or parachute from planes, I have offered to paint portraits in exchange for donations to The Somerville Foundation, and to develop an online Art Club for CHD patients to use as a constructive distraction activity.

I wonder, what will you do

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